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Meet the Community

You are not alone. The entire FA community, also known as the FAmily, is taking this journey with you. Meet a few of our dynamic people with FA below.  New Meet the Community interviews are posted every Monday, so be sure to visit often.  Please e-mail info@curefa.org if you would like to be interviewed for a Meet the Community post.
 

FARA Ambassadors

The FARA Ambassadors are a group of people living with FA who are committed to supporting FARA in the search for a treatment and cure. They represent the community by speaking at events, meeting pharmaceutical partners, giving media interviews, and more.

Meet the FAmily!


AJ Perez

aj-perez-2 Name: AJ Perez

Age: 34

Where do you call home? Austin, Texas (gotta have that BBQ haha)

Education: I have my associates degree, I’ve always chosen the work experience.

I do have a tremendous amount of respect for those who have their degree, especially those who climb all obstacles and conquer the difficulties that stand in their way. I’m in the process of creating an opportunity for people with FA to have their shining moment, bring awareness to FA, and funds to families in need of assistance due to FA. I use to be so mad at FA and I still am, but I’m also happy because it helped guide me to my purpose. I want to help those affected by FA, be that older brother or shoulder for those to lean on... Know this, I’m fighting with you and I will always be in your corner even after they find a cure, I’m here for you!

Tell us about your family: I am married, and have been married for 12 years. FA has definitely implemented itself into our marriage. At times it makes me feel like more of a patient than a partner. I also have two kids, a daughter who is 11, and a son who is 7. They are both so active, and keep me going.

What's a typical day for you? (deep breath haha) Monday - Friday I TRY to get up at 4:30am to go to the gym 3x’s a week (if you don’t use it you lose it) I have a full time job working with special education kids at an elementary school. Then I come home, usually fall asleep and go to my second job from 6-10:30. On the weekends we go go go, usually kids soccer games, or family adventures. We like to go see and do things. FA definitely shows its face but I CAN'T let it win! My legs and lower body absolutely feel the effects; when they weaken, I stumble, often catching myself from falling (if I’m lucky) on nearby walls.

Denise Votta

Denise Votta Name: Denise Votta

Age: 31

Where do you call home? Switzerland (also the Beach and the Seaside)

What is a current goal you have with your education? Lawyer at the social insurance services office. In the future, I would like to use my knowledge about the legal aspect of the social insurance services to help myself and people in similar situations (if one day needed).

Who do you live with? With my boyfriend.

What's a typical day for you? Three times a week, I start my day with a physical therapy session early in the morning. After the therapy I go to work (now I work from home because of the covid pandemic). However, there are some advantages working from home: there is more time and power for other activities. In the evening I spend my time with family and friends.

Britanie Sutton

Britanie Sutton Name: Britanie Sutton

Age: 28

Where do you call home? Tennessee

What is a current goal you have with your education? I have recently made the decision to go back to school for accounting

Who do you live with? I live with my husband, Michael, and two children, Laci and Landon.

 

Richie Currier

Richie Currier Name: Richie Currier

Age: 43

Where do you call home? Winthrop Mass. A small town just a quick ride to Boston and next to Logan Airport.

Education: Bachelor’s degree from Salem State University.

Who do you live with? Happily married since 2005 with 3 daughters. Gabriela (15), Mia (14) and Audra (10).

What's a typical day for you? I wake up, get ready for work, eat breakfast, then hop online to start my day at work. Two days a week I see a personal trainer to stay healthy and strong.

 

Ali

Ali Name: Ali

Age: 24

Where do you call home? Turkey

Education (degree(s): How will FA add to your future [career]?: My future goal is software engineering and informatics specialist.

Who do you live with? I live with my family and siblings.

What's a typical day for you? I'm usually at home, doing research during the day, watching movies, listening to music and planning what I'm going to do tomorrow. I meet my needs with the help of my family.

 


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